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I can't help but wonder and hurt for Angela and Jayden's birth mother's.  A mother is always a mother no matter what choices are made.   And although it is very easy to feel anger towards these women, I can't help but grieve their loss of their amazing children and at the same time feel the deepest of gratitude for giving them life. 


Anyway -- I couldn't thank God enough for making me a mom -- the perfect mommie for my babies.  I'm so grateful to walk this journey with full confidence that I was never intended to do it alone. 
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Friday, May 4, 2012

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I know I repeat myself so many times on this blog but seriously -- Angela is amazing.  It's kinda funny 'cause with our family's process of switching home churches we have met lots of new people who never knew the old Angela.  We go on and on about how amazing she is and how much progress she has made -- they probably really don't get it.  I resist the urge to pull out old photos and show the crazy transformation that has taken place -- it's difficult, but never the less so far I have resisted.


This week I took Angela to the eye doctors.  Again -- amazing.  Angela went through the normal exam and at the end I had the most amazing conversation with the doc.  She proceeded to tell me that one year ago -- and she pulled up her notes in the computer -- she notated that Angela had little to no functional vision.  In Today's exam, Angela's visual impairment was hard to spot.  It's certainly there but compared to where she was one year ago -- holy cow -- Amazing.


I remember the day when all Angela would do was seek out a light source and stare off and self stimulate herself.  She would arch her back in such a forcefully manner to seek out the light -- it was really an phenomenal behavior and way to self stimulate.  This behavior is no longer seen -- ever.  Occasionally she will get sleepy and stare off, but most kiddies do.


Then there was the sneaking in her room.  When Angela first came home there were a few self-harming behaviors that she would do that we worked very hard to stop.  When she would lay in her crib we would stand in her room and observe her and try to catch and correct the behaviors.  She would never have any clue we were there.  Lights could be on -- we even could be making some slight noise, and she would never notice our presence.  These days she spots us from all the way across the room -- there is no hiding or trying hide things from her line of vision.


Recently she started a new behavior -- one that shows just how good her vision is.  She has began to turn hear head around to be nosy and look at people behind her.  Physical therapy has been a mess lately cause half the time, while in her gait trainer, she is desperately trying to turn her head to catch what the other kids are doing.  Can you say rubber-necker?


Amazing.  This girl blows my mind.  But then again should I really be surprised?  We serve a big God who is more than capable -- more than able.  Love Him.  Love her.  

This journey is amazing.

Wednesday, May 2, 2012

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This past seven days brought on a whirlwind like no other.  Jayden has been struggling with some aspiration issues for some time now and this past week it finally caught up to him.  When we originally brought Jayden home he was doing great medically.  But two things happened that seemed to create the perfect storm.  The first is that the medicine that Jayden takes to help dry up his oral secretions, or drool, has lost all effect on him.  Since Jayden has no swallow due to his brain trauma, whatever he does not drool out his mouth goes down into his trach and lungs.  Normally since Jayden moves so much and has a great cough he seems to manage this rather well, but lately the volume has been just nuts and even him, being the mover and shaker that he is, is having trouble handling it.


Jayden did receive Botox two weeks ago but is was a fail.  Sadly we have seen no results which was such a major bummer.  The second issue is that some time over the winter Jayden's Fundoplucation came undone -- another really major bummer.  When we would go for visits in December we would notice a small little puddle of spit up on the floor but the docs didn't seem to be worried about it.  Over the past few months the small puddles have turned into much more and now we are seeing refluxed formula going down into his trach and most likely his lungs.



To make matters worse, my biggest nightmare concerning Jayden's lack of intact fundo came true -- he got a stomach bug.  On Friday Jayden began to vomit full force and began to really struggle to breath since tons of puke was going down his trachea.  We took him to the ER where they confirmed with xray that he does indeed have aspiration pneumonia.  Thankfully we were able to bring him back home.  The ENT and ER staff decided it was best to keep Jayden's trach inflated, which basically is a little balloon on the trach that kinda seals off the upper airway preventing anything from going into the lungs.  With his trach inflated full time his O2 saturations are back to almost perfect, the best we have seen since bringing him home.  So now we wait to hear some type of plan from his docs, which unfortunately seems to be more difficult than easy.